Tag Archives: celebrations

My One Constant Companion

HS_Birthdays_30thToday I’m celebrating a very special day, a milestone birthday of a very different kind. Google has revealed that Steve Jobs, Ben Miller and Kristin Davis were all born on this day, but as interesting as that is, I’m not really celebrating their birthdays. Today is my Godmother’s birthday, but it’s much more than that too. Today also happens to be my birthday, but, according to my birth certificate and my Mum, both of whom I trust implicitly, I’ve got another 366 days to wait until I reach my next noteworthy milestone, so my birthday celebrations this year are relatively low-key. Despite all these great reasons to celebrate, today I’m marking 30 years of one of the most significant events in my life:

30 years of living with T1D*

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This is me, the Christmas before I was diagnosed

With a less than auspicious twist of fate, my life changed completely on the day I celebrated my 9th birthday and, believe it or not, 30 years on I can say that it arguably changed for the better. Don’t get me wrong, I would give anything to not be living side-by-side with a chronic illness, but the events of that day enabled me to return to much improved health and, most importantly, haven’t stopped me doing pretty much anything I’ve wanted to since then. After months, and maybe even years, of displaying what are now the well-recognised symptoms of undiagnosed diabetes – think excessive, unquenchable thirst; massive weight loss; increasing and unexplained lethargy and a constant need to wee – an unexpected collapse at school led to an emergency hospital admission, a fear-filled night as my parents had to face the unimaginable possibility of losing me and finally a diagnosis that would shape the way my future unfolded. Without even knowing it, and certainly with little regard for my opinion, this uninvited visitor came and took up permanent residence in my body, where it has lived in varying degrees of co-operation since the mid-1980s.

The last 30 years have seen amazing developments in the care of T1D, but the most momentous event actually happened 65 years before my own diagnosis. Before 1921, my parents’ worst fears of that night would have been realised as, until the discovery of insulin at the University of Toronto by Banting and Best, SAM_0827those diagnosed with diabetes mellitus had no chance of survival and could only delay death from the illness itself by starving the body instead. Their discovery followed on from the hard work of  other scientists and medics from around the world such as Oskar Minkowski, Joseph von Mehring and Paul Langerhans, for whom the cells in the pancreas were named, and I doubt that any can deny the life-changing impact that the discovery of insulin has had on those of us living with T1D.

My first decade with T1D was heavily influenced by the incredible mind of my consultant, Professor B, who was compassionate, understanding and impressively forward-thinking in his approach to my care. One great example of his progressiveness is reflected by the DAFNE (Dose Adjustment For Normal Eating) approach to T1D management, which teaches PWD** to “…match their insulin dose to their chosen food intake on a meal by meal basis…“, and which was introduced to mainstream diabetes care in 1998 as a somewhat revolutionary new step. I somewhat nonchalantly shrugged my shoulders at the announcement as I’d been following that regime for around 10 years before it was accepted as being effective by the rest of the diabetes world, all thanks to Professor B and his focus on helping to improve my teen struggles with T1D.

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My collection of Novopens!

Likewise, within 2 or 3 years of diagnosis, my “futuristic” disposable syringes and bottles of insulin, which had replaced the glass syringes and metal hypodermic needles of the 1950s that needed constant sterilising and re-sharpening, had themselves been replaced with one of the first models of the Novopen. This was the first insulin pen injector of its type and combined syringe, needle and insulin bottle in one unit. I worked my way through several upgrades of the Novopen and these days use a combination of a pre-filled disposable pen injector and the last pen injector that I had, a green Novopen 3, which still works in impeccable fashion nearly 20 years on from when I was first given it. Two decades on and I’m so excited to have embarked on another adventure, this time with the relatively new innovation in diabetes care, the Freestyle Libre system for blood glucose monitoring. Whilst I’m not at the forefront of PWDs trialling its use, I have offered to collect data concerning my usage for a research student looking to compare blood glucose monitoring behaviour following the use of the Freestyle Libre, a study that I would hope would encourage some NHS funding for these short-lived sensors which really could revolutionise T1D for many.

To put the last 30 years into context, I worked out some quick statistics of what 3 decades living with T1D has meant for me:

  • An average of 3-4 BGLs measured a day, sometimes a lot more and sometimes considerably less, adds up to around 43,838 blood sugar tests…
  • …and assuming equal use, though the truth is anything but, each of my fingers has been pricked nearly 4,500 times.
  • There’s been in the region of 41,636 injections to keep me healthy…
  • …most of which have in my thighs, bum and upper arms…
  • …although, after 25 years of steadfast refusal to consider anywhere else, I now inject almost exclusively in my stomach and have the bruises to prove it!
  • I’ve been involved in several research projects since almost day 1, including one which resulted in the longer-acting insulin I now use on a daily basis…
  • …and more medical students, visiting foreign doctors and interested consultants than I care to remember…
  • …and the involvement of both G and M in current research to investigate a possible genetic marker for T1D.
  • One amazingly fantastic juvenile T1D consultant, considered to be one of the top men in the diabetes world, around the world
  • …and another who I remember joining my team as a junior doctor at our local hospital and who is now a Professor in this field in that same hospital…
  • ..as well as the care of another unrivalled T1D consultant during both my pregnancies to ensure the safe arrival of my babies and my continued health too.
  • And there have been the inevitable times in hospital, particularly during my emotion-ridden years and fortunately only 1 major complication resulting from my teenage rebellion stage.

A cure may not yet be in sight, but with the amazing developments of the last 100 years, who knows what the next 30 years will bring?jdrf-ndam

 

*T1D – Type 1 Diabetes                                                                                                                      **PWD – People With Diabetes

Another year over

And just like that, it’s another year over: 12 months of big medical decisions, longer-than-expected hospital admissions and a huge amount of growing up in the 7Y2D household. There’s still lots to share about our December, but that will have to wait for 2016’s posts to start, especially as I need to gather my thoughts and reflect with a clear head and heart about all that happened.

For now, let me simply wish you all a new year filled with peace, happiness and love

from my family to yours, Rxxx

To my darling daughter,

To my darling daughter on the eve of your 12th birthday:

This wasn’t quite what I had planned.

Today I was supposed to be baking up a storm in the kitchen, IMG_0063[1]making some special cupcakes to celebrate your 12th birthday tomorrow, cakes to make up for you having to celebrate your last birthday at GOSH with M and without a cake. The ingredients are bought and hiding at the back of the cupboard, so maybe I’ll have the chance to bake them for you for Christmas because instead I’m over 100 miles and 3 hours travel time away from you.

Today we were supposed to be enjoying time together as a family as well as with your beloved Godfather, Uncle A and his family; instead you and Daddy are at home with them all, whilst M and I while away our hours within the confines of GOSH on our own.

Tomorrow M and I had planned to serenade you awake with a rendition of “Happy Birthday” before watching you open your presents and cards and sharing the excitement of each new gift with you; 20151018_133210instead we’ll be watching via FaceTime to see what goodies you’ve received with our fingers crossed that our cards have arrived from London in time.

Tomorrow was going to be a busy day: first to watch you both in our church Nativity, then head off for a special birthday riding lesson before a late lunch at Wagamama to celebrate your big day; instead you’ll be doing those things with Daddy, Uncle A and the rest of the gang, whilst M and I share a quiet day and hope to be able to get to the Carols by Candlelight service at the church around the corner from GOSH.

However, it doesn’t really matter what was planned or what’s going to happen. The most important thing is that even though we’re all these miles apart for your special day, M and I will be thinking of you and celebrating with you and loving you as always. I’m so sorry that we can’t be there with you this year, that we can’t spend your birthday in the way that we all wanted to, but I’m glad that Daddy, Gu and Uncle A are all there to help you enjoy it as much as possible. The last 10 days have been hard, especially knowing that we wouldn’t be home in time and I hope that next year will be very different. In the meantime, know that Mummy loves you very much; that, as I tell you so many times, you will always be my baby, no matter how old you get; and be warned that, when I see you next, I’ll be wrapping my arms tight around you and hugging you close for an awfully long time. B128

Happy 12th Birthday Floss xxx

A Numbers Game

Tomorrow’s Tubiversary marks:

20141207_12421712 NG-tubes and the accompanying tube changes, which included…

2 tubes pulled out by accident and 3 that broke unexpectedly;

4 pump backpacks worn out and replaced (and number 5 will be needed soon);

approximately 70 Feeding Friends stickers and 60 strips of Tegaderm used to keep that tube firmly stuck to the side of his face;

and at least 3 other tapes tried, tested and rejected;

1 Christmas, 1 Easter and several birthdays survived and celebrated;

11026157_10152614450811123_382817830123987117_oNearly 1 whole school year achieved with only a few days off;

1 week away in Cornwall enjoyed;

4 weekend trips planned, packed for and successfully negotiated;

5 safe foods and 2 safe oils identified and back in his diet, resulting in…

…around 15 new recipes adapted and perfected…20151121_162110

4 new kitchen gadgets invested in and well-used…

…and impressively 16 restaurants found to be amazingly able and willing to accommodate the trickiest of dietary requirements

 

Not forgetting:

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M's daily batch of medicines

410 litres of E028 pumped

12 daily medicines reduced to just 3;

nearly 3kg of weight gained

5cms of height grown

 

And including:20141216_121143

12 months of stock counting, and rotating, and checking, and ordering

52 weeks of new syringes and dressings

365 days dealing with pumps beeping – …on…off…start…stop…blockages…settings…errors…”just becauses”!

8,760 hours of making sure Pictures July 06 019the tube is tight enough, taped enough, in the right place enough…and not getting caught on anything

525,600 minutes of longing to be able to hold or stroke or kiss that precious little face without the tube getting in the way

Countless tears shed, hugs shared and frustrations vented

 

All amounting to…

One year of the best health ever

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Fitting in a birthday celebration when we can…

Today’s a special day. It hasn’t quite turned out as planned, but then again, things quite often don’t in our household. Presents have been bought and wrapped and cards have been written, but the birthday boy wasn’t at home this morning to open them. I thought we might enjoy a family meal together at home tonight, but Mike has been away on business, so we’ll be lucky if we just about manage a strategically ordered takeaway before 9pm instead. I was even hoping to bake a cake, but work commitments have left me running around a little like a headless chicken this week and unless things improve drastically before that 9pm takeaway deadline, I really don’t think that will happen.

Mike & his hero Dave Gorman - last year's birthday pressie. Wonder what this year will bring?

Mike & funny man, Dave Gorman – last year’s birthday pressie. Wonder what this year will bring?

So instead, let me take the “easy” way out and instead wish Mike an amazingly happy birthday! It might not have been the birthday celebrations we’d have chosen, but I hope your day is a good one and G, M and I can’t wait to see you tonight for a mini celebration before bedtime.  We love you lots.

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Fast food – home-made style!

We are generally not a fast-food eating family, which, given the array of allergies we’ve had to deal with over the years, is probably a good thing. It’s not something we’ve noticed we’re missing out on and I doubt we’d ever be burger joint regulars even without the allergies, but all that being said, there are definitely times when being able to pick up a burger and chips or to grab fish and chips from the chippie would make feeding the family one less headache to deal with at the end of a busy day. I don’t think the children have ever really felt like they’re deprived in this area, especially as there were occasions before allergies became a big deal or we’d ever even heard of EGID that we would treat them whilst on holiday; GcsqwFsrRVGMfVc18IAf_imagebut there have been a couple of events recently where M has really struggled with not being able to eat on the go like so much of the rest of the world.

The first was back in July, he went to a friend’s paint-balling birthday party, which was followed by lunch and birthday cake at the local McDonald’s. M was brilliant. He was keen to join in and spend the time with all his friends and asked me to take along some safe food for his lunch. He sat with them whilst they enjoyed their Happy Meals and asked his friend’s Dad if he could have a small portion of fries to smell at the same time. This may sound strange and it’s most definitely heartbreaking to see, but is a coping mechanism he picked up from a couple of the amazing children we met during his GOSH stay last year. It is widely reported that if you lose one of your senses, the others become more acute to replace it and it is this theory that has been put into practice here. M may not be able to eat many of his favourite foods any more, but he can still garner great satisfaction from enjoying their distinctive smells instead. When you consider that your sense of taste is hugely influenced by your sense of smell, after all we all know how bland food can seem when we’re struggling with a heavy head cold, then I guess that it’s no wonder that M finds such enjoyment from smelling what he can’t eat.

With the party behind us, the issue of fast food didn’t raise its head again until just a few weeks ago following a family evening out at a local art exhibition. I had managed to feed G and M before we headed out the door, but Mike and I, no strangers to late night meals, decided that the timing was such that we could only grab something on our way back home. We stopped to quickly pick up burgers and almost instantly both children went into minor melt-downs. I knew that a lot of their complaints were the result of the late night and a desperate need to get to bed and sympathised with their frustrations at not being able to eat something, anything “normal” for a change. I put my thinking cap on and determined to create a meal that could somehow replace the humble burger in our household and give the children the taste sensation they were craving. 20150925_190329I remembered that a couple of summers ago, I had created a fantastically tasty lamb and mint burger recipe and I wondered if I could take that basic recipe and tweak it to meet M’s new dietary needs.

The great news is that I absolutely could. We buy our fresh meat, fruit and vegetables from a local co-operative and one of the ingredients I had spotted before was minced chicken. Adding a mix of seasonings and herbs as well as a generous helping of golden syrup, I prepared some great tasting chicken burgers. I whipped up a batch of rice flour pancakes to replace the bread roll for M, though we’ve decided that my flatbreads would work equally well. They were declared an almost instant success by both M and G, who have asked for them on more than one occasion since. Even better, I discovered that I could use the same recipe to create mini meatballs, which M enjoyed with rice pasta drizzled with a little rapeseed oil, some diced cucumber and a handful of additional herbs. So, one simple recipe led to 2 great new meals for my now slightly-less-moody children – a job well done!

Afternoon tea at the Celtic Manor

ladies-and-redwineAt the end of last year, not long after M had been discharged from GOSH, my Aunt celebrated a milestone birthday and my Mum started talking about a trip to the Celtic Manor in Newport for a celebratory afternoon tea. Fast forward 9 months that have taken us even closer to her next birthday than the one we were actually celebrating and with Mike organised at home to do the school-run and sort the children for the day, the three of us finally managed to become “ladies who lunch” as planned. We booked a table for their Autumn Afternoon Tea at 2pm and arrived a little earlier* (*for little, read 1 hour) than necessary due to my Mum’s anxiety of being caught up in the Rugby World Cup traffic and the pressing need to arrive early, no matter where we’re going.

We spent the first 20 minutes wandering the grounds and browsing in the shops before kicking our celebrations off with a glass of prosecco and a chat until it was eventually time to venture a little further to the Olive Tree Garden Room. As a family we are now well-versed in the world of disability and additional needs due to not just EGID and multiple food allergies, but also the presence of T1D, Parkinson’s Disease and Multiple Sclerosis amongst our members. Everywhere we go is assessed on their ability to cater for all these needs and I’m sorry to say that here the Celtic Manor failed at the very first hurdle. The Olive Tree Garden Room is a 20150918_142930stunning place to relax and enjoy the treat of an afternoon tea, but from every approach it is only accessible by steps and whilst a portable ramp is available, the staff were slow to offer help when it was so obviously needed.

These things aside, we made it to our table in one piece and couldn’t wait to get started on the tempting and extensive menu that formed our afternoon tea. The meal began with a glass of warm Winter Pimm’s – delicious – and the Harvest hamper filled with 4 bite-size savoury treats that tantalised our taste-buds and gave us an inkling to what to expect for the rest of the meal. The detailed menu impressively showed the allergens present in each of the different items on offer and I was pleased to see that gluten-free alternatives were available. On this occasion, we didn’t test their allergy offerings, a real treat for me, but I’d be keen to return to see whether they could cater for G with her gluten- and dairy-free needs and if they favourably compare to the “normal” dishes. 20150918_142925The sandwiches that followed were equally good and sized perfectly so that we could manage the cakes that came next.

The cakes were a sight to behold and it was really difficult to decide exactly where to start before trying each and every one. It was at this point that we all were finally beaten – well 5 cakes and pastries, however mini, is an awful lot for one person – but the Celtic Manor is obviously well-used to this experience and were able to offer us cake boxes to transport those extra ones home to enjoy at a later time. I cheerfully packed my remaining 2 away and eagerly looked forward to the final part of our tea, the scone. After all the other mouthwatering courses, I couldn’t wait to taste the scone with jam and clotted cream, which has to be the best bit of any cream tea in my opinion and I was confident that this one could be nothing short of exceptional.

Sadly I was very wrong and we were massively disappointed with the freshly baked Cherry Bakewell scones that arrived. The scones appeared to be so freshly baked that they were, in fact, under-done and tasted stodgy and sticky in the mouth. The Cherry Bakewell embellishment was a complete step too far and did nothing to add to the taste experience as it consisted purely of a sticky cherry syrup thinly spread across the top and a few flaked almonds added for effect. I struggled to eat it and gave up half-way through as it really wasn’t edible. To make matters worse, our disappointment with the scones was compounded by the poor quality of the tea served with the meal. I’m not sure who had trained whoever made the tea, but my Mum’s Earl Grey was the colour of a strong builder’s tea when poured and even our request for a second pot and then a pot of boiling water, did little to improve the flavour. In comparison, the coffee I had was fantastic and my Aunt much preferred the coffee to her original and fairly unpalatable English Breakfast tea.

I would love to be able to say that my review ends there, but I just can’t. Scones and tea aside, even though they’re fairly integral parts of any afternoon tea, the rest of the food was delightful and we really enjoyed everything else we had to eat; but – don’t pretend you didn’t sense there was a “but” coming – the service we received just didn’t match our expectations of the Celtic Manor. The staff members were not overly attentive and I found myself almost constantly having to grab someone’s attention each time we needed anything, however small. betterThey forgot to take our orders for tea and coffee and excused this surprising fail by blaming it on the “..very busy room..”, even though it was never more than 1/3 to 1/2 full during our visit. I flagged down our requested additional pot of hot water when it was delivered to the next door table, helped myself to extra knives from an empty table behind us when our clean cutlery ran out and even ended up asking the staff to clear our table of empty glasses and dishes to allow space for the cake stands, teapots and cups and saucers still to come.

The last straw really came when I asked for a clean cup for my Mum after her second pot of Earl Grey was delivered to the table and the waitress reached over and removed her cup. Just. her. cup. Not the saucer, not the spoon and certainly not all 3 items together, but the cup on its own and swapped it for a clean one, still swinging the old cup with its remnants of tea sloshing around it from her other hand!

20150918_145226Let me be clear: in no way did this spoil our enjoyment of the afternoon at all and in fact it gave the three of us a fit of the giggles, much to the bemusement of our unsuspecting waitress. We loved our table, even though it was tucked away in a far corner, as it gave us an uninterrupted view of the rest of the room and we all enjoy participating in a spot of people-watching whenever we can. However, given the Celtic Manor is described as a “luxury resort” and has 5-star status, the service was not what we had been expecting or hoping for our birthday celebrations. Would I recommend a visit? Yes, I think, but be warned about their scones and hopefully their service might have improved by the time you get there.

9th celebrations

“Sometimes,” said Pooh, “the smallest things take up the most room in your heart.”

– AA Milne

I can hardly believe our beautiful, cheeky and courageous little man has turned 9.  He continues to amaze us and I have no doubt that this year, just as in years past, he will carry on stepping out bravely with his indomitable spirit intact.  Happy birthday little bean – we love you.